Dr. Andrew Wakefield, the doctor who first concluded that autism and the MMR vaccine were linked, was found guilty of over 30 charges by the General Medical Council last week. He has been on trial for more than two years. You can read the Fitness to Practice Panel documents here:
All over the internet, people are spouting reactions. Clearly, I’m a fan of the internet, and opinion spouting, but tonight I am concerned about the larger effects of this extended controversy.
The vaccine debate is possibly the most divisive quarrel in the greater autism community (meaning people with autism, and their parents, doctors, and general entourage), and it has sapped a lot of our potential strength. I can’t even imagine the total amount of time and money we have spent researching, writing, analyzing, griping, gossiping arguing, blaming, defending, and promoting different sides of this issue. The fact that most of us who participate in this debate are immensely unqualified to speak scientifically about it does not seem to faze us, and, accordingly, the internet is littered with impassioned statements with little to no academic references.
Meanwhile, while we furiously type un-referenced diatribes, our growing community, which most of us agree is under-supported and poorly understood, has to make do without us. When we spend our energy pointing fingers at each other and howling about the idiocy and fraudulent nature of each other’s arguments, we lessen our potential as a united force for good.
I understand that many people feel THEIR vaccine argument just MIGHT be saving incoming children either by keeping them from being vaccinated, or by maintain herd-immunity, and I acknowledge the possibility of this kind of contribution. However, I want to point out that when we non-researchers put our energy towards creating empowered, positive attitudes and programs in our communities (see a list below for ideas), we aren’t gambling with our efforts. We can be reasonably assured that we are contributing positively in a community which can’t afford to waste any energy.
Today we started our writing and illustrating group for the Autism Community Center of Asheville! This was taken at the end of class, when people were explaining their art or writing. You can see more videos from the Activity Groups on the Autism Community Center website.
I had so much at this group today. It was the first day, so everyone was a little anxious, but once we got going it was awesome.
I’m a little behind on the autism news, but several significant events have occurred lately that deserve coverage, even if it’s a little belated.
First of all, check out Matt Savage (left)! This kid can play the heck out of the piano!
As you may know, I work for Dragonfly Forest, a free camp for kids who have autism. This year, we are presenting at several conferences about campers with autism, and making a typical camp setting more accessible for kids with autism. Here is one of my main points about the difference between a camper with autism and a neurotypical campers.
You and I and other neurotypical people are constantly social-referencing. That means we are using other people’s behavior to guide our own behavior. In a group, we look at other people to see what they are doing. If everyone heads over to look out the window, we sort of want to do that too.
We study each other’s tone of voice and facial expressions closely, and use that information as a social cue for own behavior. In fact, we even mirror other peoples facial expressions when they speak to us (imagine a friend telling you they got some sad news, your mouth will turn down, and your eyes get soft, almost as if you had received the sad news yourself). We ‘instinctively’ know when a class or meeting is almost over because everyone starts rustling their papers and gathering their bags. In contrast, people with autism are often self-referencing, which means they are checking in on themselves, and using their own feelings to guide their behavior instead of using others behavior to guide them.
Examples of social cues (things that you know how to interpret even though no one ever explained them to you):
Self-referencing (and missing social cues) can lead a camper with autism to
You can help a camper who is self-referencing by:
I have resigned from my position at the Autism Society of NC. Honestly, I really loved my job there, even though it was stressful and frustrating at times. I really appreciated getting to work closely with families, and see so many different way of raising a child with autism. There really is no one way to do it, just like there is no one way to raise any other kid.
Anyway, I have no regrets about resigning from a job I loved because I get to do THIS instead! I am going to run activity groups and parent seminars for the new Autism Community Center of Asheville!
I’ve been complaining for years that there are no recreation/leisure activities for people on the spectrum to participate in. I mean, people on the spectrum who can access the same activities as neurotypicals are doing that, of course, but some people do not enjoy those activities, or need more structure and explanation than many of those groups offer. I decided that I should just stop complaining, and use my summer camp director experience to create some great activity groups that are high-interest, low-anxiety and focus on having fun. Enter the new Autism Community Center, which will be located at Westwood Baptist Church in west Asheville.
We are going to begin by running activity groups (read more about them) and a monthly Parent’s Night Out. Eventually, the Autism Community Center will have an afterschool program, counseling services, academic tutors, and parent workshops. Check out the website, and tell us what you think!
I can’t really believe that the year has gone by this fast, but apparently everyone was right, and adulthood, or, in my case, “adulthood”, is flying by. This is third year that Dragonfly Forest will have an overnight camp for kids with autism! It seems like it was just yesterday that I was agonizing over the details of the program design, and explaining why the schedule had to be both rigid and flexible at the same time.
Anyway, enough reminiscing.The application for Autism Camp at Dragonfly Forest is officially open for 2010!
This year, campers can apply for an overnight session or a day camp session (see the website for session dates). We hire adults (18 plus) with autism to work as counselors or program staff, and we have a counselor-in-training program for teens on the spectrum.
I think I’ve said this before, but camp is the most fun I’ve ever had. Come check us out and see why I’m as excited as a cat in a mouse store!